Chronic Fatigue Syndrome

Warning, this post is probably not going to be upbeat, I’m not feeling particularly cheerful or optimistic right now. I’m sure my mood will brighten but I need to be honest.

I have chronic fatigue syndrome, diagnosed in early 2013. This is not something I talk about much here, or anywhere really. It’s boring and miserable and, whenever possible, I tend to bury my head in the sand and pretend it’s not happening.

CFS really sucks. Plain and simple. For more information on what CFS is check out this link. There are different levels of CFS and I’m one of the more fortunate sufferers. I’m able to live a relatively normal life, I’m not bed bound or using a wheelchair. Though I live in fear of my condition deteriorating and ending up in the this position for now I am able to function most days.

However I feel poorly most of the time, different degrees of illness depending on the day. Some days my symptoms are mild, I have muscle pain, headaches and low energy but I can care for my children, cook meals, pursue my hobbies and socialise a little. Other days are worse, I get flu like symptoms, congestion, sore throat, more severe muscle pain, more severe headaches, nausea that prevents me from eating, and so little energy that I feel as if I can barely climb my stairs to the bathroom or interact with my children.

I’ve been attempting to manage this condition for four years now and I feel as if I’ve made very little progress. There is no treatment for CFS, only management and meds to cope with the various symptoms. When I was diagnosed I was told I would get better, I had been diagnosed early, my symptoms were not severe. I was optimist, I would beat this. Lately I’m losing hope, perhaps this is just my life now?

Some days I worry that there is something else wrong with me. CFS is a diagnosis of exclusion. Meaning that you get tested for everything else that could possibly be causing your symptoms, and when they draw a blank, if your symptoms fit the pattern, you get referred for assessment for CFS. Not massively reassuring, no conclusive test results, and no proven treatment plan.

So I was diagnosed, and sent on a six week self management course. I was given two suggestions for improvement. Graded exercise and pacing.

Graded exercise means committing to a certain amount of exercise each day, starting small and theoretically building up gradually. I wasn’t directed in this approach by the doctor who diagnosed me beyond her saying “take a five minute walk each day and build up the time gradually”. I say theoretically because I have never been able to build up my exercise levels. I committed to walking each day, which can be incredibly difficult and doesn’t appear to be making me better, some days it makes me feel worse. Still I do it because I need to be doing something! The verdict on graded exercise as a treatment is muddied, a small study proved it helpful, but the results and treatment have been controversial.

Pacing means limiting your activity to a manageable level each day, with rest breaks. You establish a baseline, the level of activity that you’re capable of without symptoms. Starting with your baseline you gradually increase your activity whilst ensuring that the additional activity isn’t increasing symptoms.

I find pacing difficult to commit to for two reasons. Firstly my families needs vary from day to day, I cannot delegate too much to my husband as he works hard to support us and would become exhausted trying to take on my workload as well. Secondly with the issues associated with CFS, brain fogginess and concentration issues I find monitoring my activity levels very stressful.

So that was what the NHS offered as solution. Leaving me searching the internet for ideas. Unfortunately this was equally stressful. The suggestions I found include alternative therapies, the lightning process, oxygen therapy, vitamin supplements and dietary changes. None of them proven, most costly and all requiring time and energy which I am reluctant to commit as I have so little energy already.

So I’m left with this illness and no obvious solutions. It’s an invisible illness, meaning most of the time I look fine no matter how bad I feel. Added to this CFS has historically been misbelieved, dubbed ‘yuppy flu’ in the 80’s and even now there are people (some of whom are doctors) who believe it a form of health anxiety and the best approach to just get on with it. I’m guilty of worrying that this is true, perhaps I’m making myself ill with my mind?

This morning my mood is dark, mid crash and I grow increasingly fed up with the cycle of bust and boom. I feel unwell, and I feel very alone in this. I have my families support but right now they are out there living their lives and I am here, sat on my sofa feeling like life is passing me by. I’m confident that my mood will lift and my symptoms will lessen, for a time, but with each crash so close together I’m growing increasingly fed up.

3 Comments

Ella, I’m so sorry you find yourself in this position. I don’t think anyone would expect you to be cheerful or optimistic. I think anyone in the same position would struggle. I appreciate your being honest. I think people need to hear how bad it is. It must be so frustrating the cycle of bust and boom. Feeling really unwell, and very alone. I wish i had someone thing useful to offer. Life isn’t passing you by, it’s just a little slower for you right now. Having confidence that you mood will lift and symptoms will lessen must be a way forward. I’m sorry this has come at half-term. It must be so hard. Sending positive vibes. You did so well last summer, I really hope you can get back to that.

My name is Tracey & I Have CFS amongst other chronic illnesses. I’m having a low mood crash at the moment you are right it does pass but it totally sucks. Life as we knew it does not exist anymore & we make a new life doing absolutely nothing we want to do but pod on. I’m mostly house bound journeys outside are on mobility scooter wheelchair & or car not driven by me. Just put one foot in front of the other that’s all we can do util there is better understanding & hopefully in the future medication to help.

Remember you are a worthwhile person & people love you even though you feel like death on a wet weekend!. I love you for posting this so I thought I would let you know so you know the energy it took to think of what to write & typing it up was well worth it

Thank you so much for using some of your limited energy commenting, it has made me smile. It sounds like you are more severely affected by CFS than me so I feel incredibly grateful to hear from you. You’re right of course and positive thinking is absolutely the way forward. Take care xx